Last Tuesday, 18th April 2017 Matt O’Neill and Peter Todd completed an overnight “dash” to Devon where they joined a patient on Wednesday morning to present at a “Treatment Decision Review (TDR) Panel” in an attempt to reverse a decision by an “Individual Funding Request” (IFR) Panel to refuse funding for treatment with sodium oxybate for an adult with severe narcolepsy.
Following a decision on Tuesday NOT to approve the use of sodium oxybate for an adult with severe narcolepsy & cataplexy due to both benefit & cost issues, we drove to Devon to attend a Treatment Decision Review Panel at Exeter Town Hall.
I would like you all of you with narcolepsy out there, including your friends and family to share this picture because it shows the impact of the decision taken for the individual.
Narcolepsy UK would like you to help us by completing this survey from Disability Rights UK. Disability Rights UK have been asked by the MPs on the House of Commons Work and Pensions Work and Pensions Select Committee to help in its investigation of problems with Personal Independence Payment (PIP).
The MPs are keen to receive evidence of problems disabled people have experienced with the PIP claim, assessment and appeals process.
Mid-March is always our busiest time of year, with more meet-ups arranged around the country each year and the gathering of the clans at the European Narcolepsy Network “European Narcolepsy Day” meeting held in a different host nation each year and now in it’s 8th year.
This year we have a great story to kick-off European Narcolepsy Day!
Narcolepsy UK have facilitated a meeting to initiate the creation of a European Patient Advisory Group to work closely with pharmaceutical companies on research and clinical trials of new medicines for Narcolepsy.
Even collectively, we would struggle to fund research but this way, we hope that we can provide our knowledge and assistance to make things happen faster.